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Figments of the Imagination?
Michael Bostwick, an associate professor of psychiatry at Mayo, says he told a gathering of dermatologists not long ago that they should stop running from Morgellons patients. "I got hissed out of the room," he says. "I think the best thing to say is that people are having an experience, and it's not explained. And people look for explanations. Separating the narrative truth, the stories people tell to explain what's going on, from the biological truth seems to be the challenge of this condition . . . The skin and the brain are derived from the same tissue. It seems completely plausible to me that brain and body and skin could all be related."
Robert Bransfield is a New Jersey psychiatrist who studies the connection between infection and mental illness. He is also one of the handful of physicians and researchers who volunteer as unpaid advisers to the Morgellons Research Foundation and who serve on its medical advisory board. "This isn't delusional," Bransfield says. "Delusions are quite variable. So, one person might have a delusion that the FBI is sending out messages to his dentures. Someone else has a delusion that their next-door neighbor is stealing their mail. But the people who have Morgellons all describe it in the same way. It doesn't have the variability you would see in delusions."
And what of mass hysteria? Could Morgellons be, in a very real sense, nothing more than an Internet virus that has taken hold in susceptible minds? "I do see suggestion with the Internet, but it's hard to explain it on that alone," Bransfield says. "You can see the fibers. The fibers can't be mass hysteria. You see people describe this who don't have a computer," he says. "It's puzzling. It's hard to make sense out of it. But it's there. "
Before Sue got sick, friends and family members say she was a high-energy, Type-A person, especially when revved on caffeine. She was the kind of person who, when she wanted to paint the house that day, would paint it, with two coats. Her husband, Tom, says he barely recognized the woman who began spending hours every day sitting on a heating pad in a hard, wooden chair in her kitchen, and spending her nights in the same chair, staring into the darkness.
When she wasn't sitting catatonically in the chair, desperate but unable to sleep, Sue was at the kitchen counter peering at her own open sores through a microscope she had purchased on the Internet or taking digital photographs of anything that came out of her. And when she wasn't doing those things, she was surfing the Web for answers. At one point, she was convinced that she had T. cruzi, a parasite that causes Latin American sleeping sickness. Her dermatologist had told her to contact NIH. Sue says a researcher there gave her information on Morgellons Web sites. She went to the MRF Web site and found that she was experiencing every symptom listed -- fibers, crawling sensations on the skin, brain fog, chronic fatigue, joint pain and more. Now, she believed, she had a diagnosis. What she needed was a cure.
The doctors may have dismissed her symptoms, but, unlike with so many others who say they have Morgellons, Sue's family believed her. When her Dino-Lite microscope broke from overuse, Tom bought her a new, more powerful Accu-Scope for Christmas. He took her to every doctor's appointment, even counseling her to slow down when she spoke because, when she tried to get everything out in the five minutes a doctor allotted her, she sounded nuts.
"Honestly, I didn't know what to think about the fibers," Tom says. "I knew they shouldn't be there. But they weren't coming off any carpet. I'd watch her pull some nasty, knotty thing out of her arm. She'd work at it and work at it and work at it and pull it out. Now, that ain't right.
"To be honest, if I did not know my wife, I would think she's crazy. But I know my wife. I know she's not crazy. If you felt like a bee was stinging you every day for two years, could you take it? I wouldn't be able to. I'd be out in front of the train that goes behind my house every day."
Still, there are some days Tom can't take it. "I'm not a saint," he says. On those days, he goes out and chops wood.
Sue's daughter Tina moved back home in July 2005 to help care for her brother when his brain cancer returned. When Tina walked in the door for the first time, she remembers, Sue was bald and covered in open sores. "She looked like a leper." Tina worried that the stress of Josh's fatal condition had pushed her mother over the edge. "If you look at your skin through a microscope 24 hours a day, you're going to go crazy," Tina says. "But then I took a look. I saw bugs and things that should not be there coming out of her skin. That changed everything." The mainstream medical community, which thinks Sue is delusional, would say that neither Tom nor Tina saw anything, but rather were drawn in by the power of Sue's fantasy. They call it folie ¿ deux, "madness of two," or ¿ trois, ¿ famille, ¿ plusieurs or whatever number is required to explain the phenomenon.
Family members say they began to find blue and red fibers on Josh's skull, where his brain surgery incision ran. They asked the surgeon about the color of stitches he used. When he said they were black, they became convinced that Josh, too, had Morgellons. Josh broke out in lesions all over his chest and back and was driven to distraction by itching. Sue says the chemotherapy eventually killed Josh's nerve endings, and he could no longer feel the itching. When Josh died in 2006 at age 22, he was covered in fibers and lesions, Sue says. The funeral home called to ask if any special precautions should be taken when handling Josh's body. "Is there anything we should know?" Sue and other family members recall them asking. "We've never seen anything like this."
Randy Wymore, a molecular biologist who studies gene expression in cancer and heart disease at Oklahoma State University, was probably the first scientist to look at what doctors and dermatologists typically discard as bits of fluff and dust. In the spring of 2005, a student in his second year of cardiac pharmacology class asked Wymore a question about muscle fibers. On a Friday, searching the Web for answers, he hit upon some fiber disease and Morgellons sites. "It sounded totally crazy," he says. But, over the weekend, he kept thinking about the fibers. On Monday, he figured it should be easy enough to determine if the fibers really are from textiles, as doctors say, or from the body, as sufferers contend. So he e-mailed some of the people who'd posted photos of their fibers asking for samples to analyze.